Social Security, SSI, And Medicare 1998

Social Security, SSI, And Medicare 1998

Susan

Daniels

Social Security:

A Report on Disability Insurance,

Work Incentives, and Return to Employment Initiatives

by Susan Daniels

From the Editor: Dr.

Susan Daniels is Associate Commissioner for Disability in the Social Security

Administration. She addressed the NFB convention on Friday, July 4, 1997. This

is what she said:

I want to give you a quick

update on what's going on in Social Security and then invite you to accept a

challenge. Social Security Disability Programs, the two that serve this nation's

people with disabilities (the Social Security Disability Insurance Program and

the Supplemental Security Income Program), are very large programs and growing.

Ten years ago, in 1986, we served five million Americans who had declared themselves

vocational failures and out of the work force. We did not go out and recruit

those five million people; they came to us. In 1996, ten years later, we have

almost ten million Americans on cash-income-supports who have come to us saying

that they are too disabled to work. In 1986 we spent fifty-two billion dollars

on cash benefits to people with disabilities. In 1996 we spent sixty-eight billion

dollars on cash benefits, and by the year 2000 we are projecting over a hundred

billion dollars a year in cash supports.

Now, ladies and gentlemen,

these are the very same ten years where open-heart surgery is almost day surgery,

where people with mental illness are having relief of symptoms using psychotropic

medication, where technology has assisted all of us in leading better lives.

Certainly I'm a user of access technology; I have a scooter because I don't

walk too well—I'm an old polio. I see a lot of computers around here—I

use one myself. I love my computer. It helps me communicate with the world.

Technology is a wonderful thing, and in the last ten years access technology

has grown for all of us with disabilities.

Access to the world has

grown. Ten years ago New Orleans didn't have but four or five curb cuts, and

they were down there right near the end of Canal Street. Today New Orleans is

almost fully accessible. Many cities around the country are fully accessible.

Finally, in the last ten years we had a full generation of young people graduate

from public schools because they had access to free, appropriate public education.

Now, one last thing, and

I bet you the one we're all the proudest of: in the last ten years we had sweeping

civil rights legislation, the first in the world passed to prohibit discrimination

against people with disabilities. These were a fabulous ten years, and yet in

this very same ten years the number of people on Social Security Disability

doubled, and the yet more and more people are coming to us saying that they

areexpenditures more than doubled. All of these good changes, and vocational

failures. What is going on? I was very curious about this problem and very interested

in it. I asked the experts, and I got a lot of answers. They told me a lot of

different reasons why people with disabilities were having a hard time in the

labor market.

We did the unusual; we

went around and asked our customers, people with disabilities. We sat with them

at round tables all over this country, and we asked them the same question I

just asked you, "What's going on here?" And here's what they told

us. They told us: it's about health insurance, Susan. The access that we have

to health care is through the cash-benefit programs, Social Security Disability

Insurance and SSI. If we don't go through that door, there's no way we can get

the health insurance that we need. We are, many of us, uninsurable in the private

market at any price. Whereas we may be able to replace the cash benefit with

earnings, we cannot replace the health care.

Second, they said to us

(and this is something that I bet resonates with you) it's about the services

we receive. We want choice. We want to choose the kind of services we need.

We want to choose the providers. We want to be treated like adults and not children—work

and going to work's a grown-up activity. They also said, "We don't understand

the work incentives, and neither do you." That was kind of shocking, but

it seemed pretty true. The work incentives are complicated. So they said they

wanted more choice, and they wanted a simpler way to use the work incentives.

Finally they said to us, "The Social Security system is an all or nothing

system—you either get in, and you get the things that you need, or you

can't get in at all, and you get nothing." We need more kinds of support;

we need more flexibility in the system; we need help sometimes, and sometimes

we don't need any help at all. We need to be able to call the shots about when

that happens. And so, ladies and gentlemen, we listened to our customers, and

we put together a series of proposals.

Today I'd like to tell

you about two of them that are currently in Congress, and I am frankly going

to ask for your support. We have submitted to the Congress a proposal to allow

Social Security beneficiaries who are on the disability rolls to get a ticket

and to take this ticket to any provider of their choice to receive the services

of their choice. If that ticket to services results in employment, the provider

will be paid when the person goes to work. Now I want to tell you the characteristics

of the ticket because I want to be sure you understand that I understand that

this is not the answer to all problems, that people with disabilities, and particularly

people with visual impairments and blindness, need a broad range of services

that no one person, organization, or program can give them. But the ticket gives

us really three things I think our customers want. They want choice: they want

to decide when to use the ticket, with whom, what kind of provider, and for

what services. This choice is very, very important to them, and so now it is

very, very important to us.

We want to see innovation.

We want all the different people who think they can help beneficiaries find

jobs, get jobs, keep jobs, and do well in jobs to come to the table and offer

their skills. That means we hope to see the kinds of innovations we haven't

seen yet but that may be out there, and maybe the ticket will help spawn ideas.

For instance, wouldn't it be wonderful if co-ops of people with disabilities

themselves could form businesses and use the ticket? Wouldn't it be wonderful

if families who have disabled members could form family co-ops to start businesses

or to run businesses? Wouldn't it be wonderful if people who have technology

would put that technology to work, not in a rehabilitation format (the kind

we always see), but just in a work format? And so we are very, very interested

in spawning innovation.

Third, the ticket pays

for results. That means that the services that we are focusing on are those

that lead to real jobs for real pay, for a really long time. This is for success

in the job market.

Finally, the ticket has

a companion. (We call this getting the incentives right.) The companion is the

opportunity for individuals who are using Medicaid and are on SSI to buy Medicaid

on a sliding scale fee when they leave the rolls and no longer need the cash

supports.

The House Ways and Means

Committee is likely to consider the ticket and will certainly be doing hearings

this year on the ticket. I hope as an organization you all will participate

in talking to Congress about your needs and about your preferences about services,

and I hope that you will use your voice—even if you don't like the ticket,

by the way—to communicate with the Congress about your needs as a person

with a disability and your needs for real employment that has real wages and

real benefits.

Now, I want to offer you

a challenge. Two weeks ago over six hundred women with disabilities from around

the world convened in Washington, D.C. These women participated in the first-ever

international leadership forum for women with disabilities. I was very, very

proud to co-host that activity with my colleague Judy Heumann. We had women

with all kinds of disabilities—physical disabilities, mental disabilities,

psychiatric disabilities. We certainly did have quite a few women there who

were blind. From these women we learned a beautiful phrase that I would like

to share with you. Then I would like to ask you to join me in a challenge. They

kept saying that to be women with disabilities today identifying themselves

as people with disabilities, they were going to be loud, proud, and passionate

about themselves and their pride in themselves. We heard over and over again

"loud, proud, and passionate." I can tell you, this group could certainly

meet those criteria. I've seen a lot of loud in this group. I've seen a lot

of proud, and I'm sure, although I haven't seen it, there's been quite a bit

of passion going on as well.

There are three things

I'd like to ask you to be loud, proud, and passionate about as well. The first

is about blind solidarity. Anyone in the disability movement who looks at the

accomplishments of people with blindness in this country, with their ability

to organize for themselves, will learn a lesson in solidarity. You are a model.

Congratulations. Other people with disabilities are learning from this model.

They are copying you, and you should be proud of that. Imitation is the best

form of flattery. Your blind solidarity, as I call it, is something you should

be loud, proud, and passionate about.

But let me ask you to also

broaden your solidarity, because each and every person in this room—and

by the way, I see many baby-boomers, and I know you think of yourselves as very

young, but I know you're not. I'm an early baby-boomer, and I'm almost fifty,

so I know that some of you are younger than me, but not much—creepin' into

middle age. That's the part of life where chronic illness and other disabilities

begin to show up. I say this only to remind you, as I remind myself, that the

fact that one little part of your body went wrong early in your life doesn't

mean the other parts are exempt. That means that like every other American you

are facing aging and a very serious crisis in health care and long-term care.

I ask you to think about

this in solidarity with other people with disabilities and with others of your

age-mates who are non-disabled. As we age as a society, we no longer have the

family structures of extended family to care for us in our elder years, and

we no longer have access to the kinds of public-supported health care that we

have come to expect. Please think about this carefully. Although you and I are

both people with disabilities, we also face the challenges of aging and a growing

aging population in our society. Please use your lessons in solidarity to stay

active in the health care debate and make sure that health care will be there

for you, for your brothers and your sisters who are disabled, and for your friends

and family who may be non-disabled.

This solidarity that we

learned from you can be used for good use in the betterment of all America.

That's your first challenge.

Second, all of the services

that we experience, all of the ones that we have, are squat if we end up poor.

I want to say that again. They're squat if we end up poor. Working is the only

way Americans can get out of poverty. You need to insist, you need to be loud,

proud, and passionate about economic opportunity for yourself, and you need

to hold all of your service providers accountable for giving you the kinds of

services that make you competitive and keep you competitive in the labor market.

This is important for your economic welfare, and the rest is squat if you're

poor. Now, I'm loud, proud, and passionate about not being poor.

Third, I want you, as you

have challenged so often, to be loud, proud, and passionate about challenging

assumptions people have. I know that you have challenged everyone in this country

in the attitudes towards people with blindness, but I want you to help us challenge

their attitudes towards everything that we often take for granted. Let me give

you an example right here in this room. I would like everyone who did not bring

their own chair to stand up. If you did not carry that chair in here, get off

it, stand up. Yes, I know, you've been sittin' too long. Stand up. Look at the

people up here at the podium. On your feet.

You thought they were special

and could stay seated: unbelievable. No, stay standing, I didn't say sit down.

First of all, you've been sittin' for two hours; you need a little circulation.

I want to talk to you about

how special that chair is. You know, a lot of people go around apologizing:

"Gee whiz, I need this in Braille, or I need this on tape, or I need this

on disk." It's a big apology. But you know, most people go around and they

don't apologize for the chair they sit on. Right? How much did that chair cost

that you're sittin' on? About seventy-five dollars. Since I brought my own,

I don't need that chair. That's right. Now, you better think about this with

all of us. People who are non-disabled take everything in the environment as

a given even though it's expensive. Go ahead and sit down; accommodate yourselves.

I want you to remember

that everything in this room is an accommodation to somebody. Now, let's talk

about those accommodations. The chairs are accommodations to you accessibly

vertical people. You expect a tushy shelf to be put everyplace you go, don't

you? You sure do. You expect it in this room, and you expect it in the restaurant,

on the bus, every place you take your tushy. You expect somebody else to put

a shelf for you to put it on. Is that not right? Yes it is.

Now if this was a different

group, I would say I want everybody to look up at that ceiling, and what do

you see? Lights. Now how many miles of wire does it take to put that many lights

in a room this size? Literally hundreds of miles of wiring have gone into that

ceiling. Now how much did that cost for all the people who are visually dependent

to accommodate them? That's right; it cost a lot of money to light a room, and

guess what? People who are visually dependent don't want just rooms like this

lit; they want every room they go into lit up—every single solitary one.

The federal government could run a lot cheaper and not pay nearly as much for

electricity if they only hired blind people.

Now, don't say to me, "But

Dr. Daniels, how much does it cost to put one of those lifts on a bus?"

I say, "I don't know, how much does it cost to put one of those seats on

the bus?" Damn good question, but I don't know. It seems to me that we

have forgotten that the man-made world of lights and chairs and escalators and

elevators, etc., is all made so that everybody can be productive and enjoy the

environment in which they live and work.

So there is no need to

apologize. People who are non-disabled don't say, "Oh, but I really need

a chair," or "I really need some lights on," or for instance

"I really need your voice amplified for me." By the way, if I step

away from this mike like I'm doing right now, only people in the front row can

hear me, but people in the back row, who depend on this amplification, can't.

Everything in the built-environment is there for all of us to use, and all we

need to do is make sure that everybody understands

that it's for all of us.

So, ladies and gentlemen,

let me ask you to be loud, proud, and passionate about solidarity; to be loud,

proud, and passionate about health care; and please, to be loud, proud, and

passionate about economic opportunities. Those are the keys to a great life

in this country, and you deserve it. Thank you.

Following Dr. Daniels's

remarks, several questions were asked. Here is a summary of those questions

and Dr. Daniels's responses:

Jim Gashel: The Ticket

to Independence is something we can support in principle and philosophically

because we proposed legislation of the same sort in the Congress over ten years

ago. We want greater choice for consumers in selecting service providers. We

thought up the concept before it was popular to talk about choice in rehabilitation.

We got choice put into the Rehabilitation Act of 1992, and before we get done,

the provisions will be stronger in the 1997 amendments.

But there are a number

of special criteria, conditions, and rules that address the needs of blind people

in the Social Security Act. So policies written under the general rubric of

the Ticket to Independence may affect us in considerably different ways from

the effect they have on people with other disabilities. The National Federation

of the Blind has conducted the Job Opportunities for the Blind Program in partnership

with the U.S. Department of Labor for twenty years. Moreover, no one else in

the entire disability field can organize a group of more than 3,000 consumers

in one place. And we have training centers across the country that are highly

skilled in getting blind people ready to engage in substantial gainful activity.

We would like to talk to

you and other policy people at Social Security and make modifications where

necessary to see that the Ticket to Independence really means what it says for

blind people. We haven't seen the language—you may have talked to someone,

but it wasn't us. So I'm asking that you and the NFB meet soon to straighten

out this Ticket to Independence.

Susan Daniels: That's easy.

Next week we will post the text of the language we have drafted for the Ticket

to Independence on the Internet and I would like to hear from you about the

problems and the issues we can start working on right now.

Gashel: One of our main

criteria for judging the Ticket to Independence is going to be its financial

aspects and how it affects blind people. I would like a yes or no answer to

this question: the Social Security Act currently has provisions that require

an applicant to accept rehabilitation services if they'reoffered, and if you

don't you will be cut off. Does this Ticket to Independence require an individual

to accept a job even if it would pay less than the combination of tax-free Social

Security benefits and earned wages at the level of substantial gainful activity?

Because if the person's going to fall off the cliff,this

is not a Ticket to Independence.

Daniels: Jim, you have

two very important issues there. The first one is really easy, and the second

one is really hard. The Ticket is a voluntary program; this is not a country

requiring compulsory work. A person enters the program voluntarily. You can

take the ticket and tear it up and put it in a drawer, or you can use it with

any provider you choose. No one is required to take a job.

Gashel: People are under

present law. Daniels: Under present law a requirement says that, if youare offered

services and without due cause refuse service from a state rehabilitation agency,

there can be a sanction. It is rarely used because we believe that people have

to choose to work.

Gashel: Is it due cause

that you are going to lose money by working?

Daniels: That is the second

and more difficult question. How do we create a system where working makes sense?

That's a lot harder. We still have to work on that. It doesn't make sense for

a lot of people to fall off that cliff. We know that people work up to it and

then back away. We all agree that this is a problem, and we don't have a solution

on the table for that right now.

President Maurer: Commissioner,

let me say this: some people don't work up to it. Some people are afraid enough

of it, they've heard enough about it, that they don't even try because they're

afraid that they might get too close. They don't know enough about the technicalities

of it. A lot of people don't come with the brain power and the background in

Social Security law that you and Mr. Gashel possess. They have heard that, when

you go to work, you lose your benefits, so they sit tight and don't lose them.

Gashel: I thank you for

the candor of your answer. It's going to be a problem for us really to support

this unless we address that issue. I hope you understand that, but we look forward

to the meetings to address that issue.

Maurer: I did not say what

I did in criticism of you. I suspect you are where you are because you don't

have a whole lot of choice. But I would like for you to think about that and

help us to remove the disincentives that currently exist under the law.

Daniels: I think you can

count on us for that. We are very, very concerned about the disincentives. It

is hard to craft solutions that work but do not also create other, unintended

effects. I have committed the rest of my career as a public official or back

as a regular street-level trouble-maker to see if we can't find a way to make

work make sense for people.

Gashel: I would add, by

the way, that the Congress found a way to do it for seniors; they ought to find

a way to do it for blind people. And I would also say that President Clinton

signed that bill.

Joanne Wilson: You talked

about co-ops. We have formed some blind co-ops in this country. One of them

is the Louisiana Center for the Blind. There are two others, one in Minnesota

and one in Colorado. These were programs started by blind people for blind people.

We have a national and international reputation as model rehabilitation programs

for blind people. Lots of blind people want to come to us. A number of years

ago, when the demonstration grants were first formed for Project Network, I

was asked to come and do some presentations to the folks who were going to be

working on that. On several occasions I went and did training sessions on blindness

and how to network with blind programs and so on, and they loved it. Then I

went home and never heard from them again. We never got a single referral, nor

did Minnesota or Colorado. My concern about the Ticket to Independence is two-fold.

How do small providers—and in the disability field (competing with groups

like Goodwill) we are small providers—how do we get referrals?

My second concern is the

payment schedule. As the rules read now, it would be eighteen months until we

could get payment—the nine months of our program and nine months of work

experience. As private-provider vendors this is not an incentive. So this new

system has been very discouraging for us. Can you give us some help here?

Daniels: You have identified

one of the chief vulnerabilities of the Ticket; it does require some level of

capital investment by the provider. We recognized this problem very early on,

but we have not completely solved it. We have talked with small providers, and

I am glad to have your feedback. We have been working with foundations around

the country, some fairly large ones, to begin to think about capitalizing this

as a real investment in people. So we are looking for other alternatives.

The real issue for us as

we formulated the ticket was: is there something we could add to what already

exists now that would not require the Congress to take funds away from some

other project or to come up with an appropriation? That would kill it right

now because we are in a balanced-budget scenario. We are looking for something

that will add on to the current situation. We believe that the ticket does not

replace anything that folks currently have. Will it work for everybody? I don't

think so. Will it work for some people? That's the question we are trying to

find the answer to now. In a very tight budget environment it is a choice between

doing something that is very frugal and doing nothing at all.

Wilson: You talked about

forming co-ops, but in the blindness field, which is a very low-incidence disability,

vendors like us aren't going to be able to participate in this program, and

a lot of blind people are going to be denied the services they want and need.

Lots of these co-ops will be out of luck unless we figure out a way of financing

the program better up front.